Jetty has had a good weekend. His seizures were mild and about every 20 minutes. He also slept a lot.
We are working with neurologists to find Jetty's base level (somewhere in between a constant seizure state and asleep) with the correct dosage of medications. Currently, if he is not asleep he is having seizures every 10-20 minutes with the occasional seizure that doesn't stop unless given heavy duty drugs that knock him out. Even when we do that, he sometimes wakes up hours later in the same seizure. Those are never fun to deal with but he ends up coming out of it eventually whether its 2 hours or 2 days.
He has been having stomach issues as well... lots of gas and reflux! He has been having trouble keeping his food down. We decided to put him back on a continuous feed with a rate of 35ml's per hour rather than 100ml's per hour every 3 hours which is what he was up to. The slower rate as well as more antiacid meds have seemed to help control his gas and reflux as he hasn't spit up in more than 4 days.
Jetty was supposed to get his PEG tube pulled out of his belly and replaced with a button snap last week at Hopkins. We went to the appointment all ready for the button and the GI Doctors told us they want to wait 2 more months. They also said that they want to remove it endoscopically which involves the O.R.. They haven't set our appointment for the procedure yet.
We are back at Hopkins on Wednesday to meet with the Neurologist who wants to figure out whether we change Jetty's medicine or try the Ketogenic Diet again. We are hoping for a medicine change!
Wake up Mommy, we have a long day of football. I am going to need chili, wings, chips, dip, beer... and that should get me through the first game.
The Chili isn't cooking itself!
This bed isn't big enough for the 3 of us. One of you two needs to get out.
